For Parents

Having a special needs child makes you, by default, the member of a special club. The Special Parents' experience of parenting is more stressful, more challenging, more frightening, and more time-consuming than that of "normal" parents. It can also be more rewarding.

Sometimes we know we have a special child before birth (or adoption). Sometimes we find out later. Sometimes the issue is congenital or genetic. Sometimes it's the result of a terrible accident or illness. Finding out can be traumatic. We grieve the loss of the "normal" child (and the "normal" life we may have had). We struggle with adjusting our expectations. We worry. We cry. And we also learn and laugh and grow.

Have you had the experience of making eye contact with another parent of a special needs kid (no matter what the disability), and just knowing with certainty that they understand? There is comfort in that. And that's why we've formed this support group. No one understands us better than other parents who share this unique experience.

Welcome To Holland

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

About the Author

Emily Perl Kingsley is the mother of a child with Down Syndrome, Jason.

Over the years she has done much to improve the ways in which people with disabilities are portrayed in the media. She worked as a writer for SESAME STREET, receiving many Emmy Awards and was instrumental in integrating mentally and physically disabled children and adults into the format of SESAME STREET. Her works with the National Down Syndrome Congress, National Media Council on Disability, as well as numerous publications have earned a multitude of humanitarian awards and special recognition for herself and her family. For a full biography of Ms. Kingsley click here.

For an opposing viewpoint ("We ALL end up in Italy") click here:

http://autismorsomethinglikeit.blogspot.com/2014/01/why-i-hate-welcome-to-holland.html